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MrFritz

URSODIOL - A Potential New Drug for PD

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Mr. Fritz, I commend you for sharing this information with this forum. I personally am going to talk it over with my neuro. Since I am not tremor dominant but more rigid based symptomatic do you think it would have the same effects? I do have tremors but perhaps since I take Sinemet 4x daily both cr and reg. that keeps tremors down,but rigidity is my true foe. It will be interesting as to what doc says and does. I'll keep you posted.

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I love this back and forth discussion.  It gives both points of views and good points from both parties. My mother's doctors have always prescribed medication based on my request though not only in that manner of course.  You'd be surprised how easily that can be done.  Everything is within reason of course and open minded doctors should have the mind set to give a trial and error option.  How do you know if something doesn't work unless it's tried and somewhere some how the idea was put to place in order for that particular drug to be mentioned.

 

Who knows, maybe some day PD will be cured by something that has always existed and readily available and was used by mistake by someone to realize what had happened.   Amantadine was FDA approved for the Flu yet it's used for PD.  Someone used it and it worked for it to be so widely used now right?  Never say never and don't be such a naysayer.   What IS FDA approved is not all a bed or roses either.  My mom is hooked on Mirapex and cannot stop taking it and is asleep 20 hours a day.  Did anyone think about that before selling it to the public?  Did the Pharmaceutical company think it's perfectly ok for that to happen?

 

I understand Christie wants a safe bet and do not like seeing snake oil salesmen at work and Fred is definitely not that. When I read what Fred had to say I just smiled and thought "good for him"  Here is a man who found something that worked and wants to share the good news.  Please don't rain on his parade and just take everything with a grain of salt.  Read it and absorb the information.  If you choose to ask your doctor about it, the MD will make a sound judgement to say yes or no.  His reputation is online so if he says yes to your request than means he/she respects your input and complements you as a smart cookie who does your research and want to get better.   If what you ask is totally off the wall then everyone can have a good laugh and move on.  No harm done.   Thank you for listening.

 

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Replying to Sister411, Miracleseeker and new info to all:

 

Many thanks to Miracleseeker for you supportive reply which exactly hits the nail on the head. It has been 2 1/2 months since I started Ursodiol and it is still working for me.

 

To Sister411: All I can say it try it and see. I too had some rigidity issues which affected my gait. That too went away with my tremors. If you do try it, the BIG question will be to determine a good starting dosage. I take two 300mg capsules per day. One after breakfast and the second after dinner. When I asked my neuro why he selected that dosage to start with, he replied that it was his best guess.

 

Just a note to all that there is another off-label medication called Phenylbutyrate that is/has undergoing clinical trials for Parkinson's.  Developed by a pediatrician at Johns Hopkins University, phenylbutyrate has been used for 30 years to treat children with a liver condition that prevents them from eliminating ammonia from their bodies, which ultimately leads to death. Here are some links to info regarding this. I don't know the current state of this study. What I did find interesting is that Phenylbutyrate, like Ursodiol, is for treating liver disease.

 

http://www.sciencedaily.com/releases/2011/03/110308173236.htm

 

https://www.michaeljfox.org/foundation/grant-detail.php?grant_id=517

 

http://www.ddn-news.com/index.php?newsarticle=5196

 

Regards,

Fred

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Thank you for sharing your experience Mr. Fritz!!  I didn't read the report but I looked up the meds and it doesn't seem too bad - less so than some of the other stuff we take for PD.  I was thinking since it has to do with the stomach and bile maybe it allows the sinemet to get into the brain faster.  I will keep this in mind if my shaking gets worse!!!  Although I would have to watch my white blood cells as one reading said it affects the white blood cells.  Otherwise, it doesn't look like it has a lot of crazy side effects like Mirapex and Requip.  

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Hi Deborah,

 

The study states: "Ursodeoxycholic acid has been licensed for the treatment of patients with primary biliary cirrhosis since 1980. It is typically used at a dose of 10 mg/kg of body weight per day in patients with primary biliary cirrhosis but Parry et al. (2010) also reported ‘excellent’ safety and tolerability of ursodeoxycholic acid in patients with motor neuron disease at 15 mg, 30mg and 50 mg/kg per day."

 

My current dosage level is 5.75mg/kg per day. At 600mg per day, you can do the math to find out I'm a little overweight  :-P  But, I am well within the safety limits and well below the recommended dosage amount. At this time, this dosage level seems to be providing me with very good results.

 

I too read up on the potential side effects which were not too disconcerting. Fortunately for me (and possibly due to my low dosage level), I had zero side effects.

 

Although it is quite possible that the Ursodiol has some sort of "amplifying" effect on the Sinemet, the study implies otherwise. It may be a faster and easier read if you just look at the first paragraph of the article in Science Daily instead of the actual study.
http://www.sciencedaily.com/releases/2013/09/130903123524.htm

 

As part of my annual Internist's check up, I took a blood test 3 weeks ago. My white blood cell count was normal but my "Mono, ABS" was elevated. My Internist did not think that this was caused my any of my BP or PD meds. However, I had had some Facet Joint injections for my back one or two weeks prior to this blood test. My Internist thinks that the steroids caused the elevation. Anyway, I will be taking another blood test next week. If it was caused by the steroids, my "Mono, ABS" level should be back to normal. If not, I'll talk with my Internist and Neurologist and let you know what they say.

 

You said "I will keep this in mind if my shaking gets worse!!!" My reply to you is, "Why wait?" It was my increased tremors, which went unabated by the Sinemet, that prompted me to try Ursodiol. If you do give this a try, please let us know how it works out for you. If you have any other questions, please feel free to ask.

 

Best of luck and regards,
Fred

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My dear McCall,

 

First, you should have clarified that you don't have PD yourself. Treatment of a degenerative neurological condition like PD MUST be evidence-based.

 

Second,  Ursodiol is no amantadine. Your comparison was completely irrelevant. Amantadine has  broad pharmacological actions and can be prescribed for a variety of   clinical uses, including  treatment of several nervous system disorders. On the other hand, Ursodiol is a LIVER drug with very restricted indications. for which there is no clinical evidence that it may have the slightest symptomatic effect on PD.

 

Whoever can read through the lines will understand what i'm trying to say.

 

PS: A doctor may prescribe a treatment  at his patient's "request" only if this treatment is compatible with current evidence-based medical practice. For example, I have young onset PD, and my neurologist insisted I should begin treatment with Neupro. I "requested" a prescription of levodopa instead, because I hate DAs. My neurologist accepted my "request", because levodopa monotherapy is an acceptable treatment option in YOPD. if I had asked my  neurologist to prescribe me a drug which is not indicated for PD treatment, just to "give it a try", he would have surely refused.

First of all I am not your Dear anything.  and you can keep your condescending comments to yourself. My post was in response to the idea that Drs. do not perscribe medications at the patients request, and I was pointing out that many certainly do. I was not saying that a Dr. would necessarily prescribe the medication in the discussion.

and while I do not have PD. [my husband does] I do have MS, Fibromyalgia and advance Lyme disease I was diagnosed with the MS about 16 years ago, long before Husband had PD.

MS as I am sure you know is also a degenerative Neurological disease.

Why are so many of your posts so Snarky? Do you really think we all need that?

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First of all I am not your Dear anything.  and you can keep your condescending comments to yourself. My post was in response to the idea that Drs. do not perscribe medications at the patients request, and I was pointing out that many certainly do. I was not saying that a Dr. would necessarily prescribe the medication in the discussion.

and while I do not have PD. [my husband does] I do have MS, Fibromyalgia and advance Lyme disease I was diagnosed with the MS about 16 years ago, long before Husband had PD.

MS as I am sure you know is also a degenerative Neurological disease.

Why are so many of your posts so Snarky? Do you really think we all need that?

McCall I have had a misunderstanding with Christie in the past, but we talked it out.  The truth is she is not intending to be offensive or condescending, English is not her first language and sometimes her intent can be misunderstood as she uses the most literal words available which can seem more cutting than it is.  Sorry we all cannot agree all the time, lets take a moment to remember PD makes us all a little cranky and our meds make us impulsive.

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JUST A MINOR UPDATE:

 

I am now past the 3 month mark since I started taking Ursodiol (10/16/2013) and I have not changed any of my medications or dosages. My internists (plural) both agree that my blood tests are normal. And neither of them see any negative effects of my usage of this drug. Also, I have not experienced any side effects from it.

 

Previously (to taking Ursodiol), my tremors had been worsening progressively. But, since I started Ursodiol, my condition has remained relatively stable. To me, considering that this is a progressive disease, I consider this to be remarkable. I had hoped to find at least one other person willing to give this a try. For the time being, I guess I'll remain the sole guinea pig.

 

My next Neurology exam is in mid June. I'll update this thread at that time. Sooner if my condition changes.

 

Fred

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In the US it is not possible to get a medication approved without double-blind placebo controlled trials. What we have here is the anecdotal results from one person. Personally, since we all experience PD differently, I would prefer to see the results over a much broader range of subjects. Even in our cumbersome system in the US, harmful or simply "ineffective for most people drugs" can make drug companies millions of dollars before they are taken off the market. I would not spend a penny for a medication so untested for use in PD, and neither would my insurance company! I most certainly would not purchase it from Mr. Fritz simply to line his pockets with my limited funds. Even the worst of drug companies use part of their profits for further research. I'm going to have to say no this time.

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Hi Beau's Mom,

 

Maybe you missed the beginning of this thread. Ursodiol is not a new drug. It has been in use for over 11 years. It is prescribed for bile stones. Its usage for PD is considered to be "off-label" only because it has not been clinically tested for use as a PD treatment. I do not disagree with anything else that you have said.

 

I'm now 70 years old and, to be honest, I'm scared sh..less that my PD will progress to the point that I will have to be over-medicated just to function at some minimal level or that I will require DBS. This drug may or may not work for you. But if it doesn't, it will not aggravate or worsen your symptoms. Nor, should it interfere with any new treatments that may become available in the future. And if it doesn't work for you, you just simply stop taking it. The down-side is just the cost of the drug. Costco's on-line pharmacy sells it for $42.66 for 100 each 300mg capsules. So, as you can see, it is not an expensive drug.

 

I made a pro-active decision not to wait for a proven/tested clinical treatment because I don't believe that one will be available in time to help me. To date, I feel that I am already ahead of the game in that my symptoms have stopped progressing. I wish you and all of the other readers the best of luck with whatever decisions you make.

 

Fred

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My point exactly. This drug has been tested for liver disease, which I do not have. It has not been tested for use in PD. I prefer not to take medications my doctor will not prescribe and Costco won't fill it without a doctor's prescription. Was I mistaken in thinking that you were offering to sell it? You have no idea what other diseases I may have and what other medications I am taking for those illnesses, and what drug interactions there might be. I am 10 years younger than you, am not a candidate for DBS, yet make my choices based on fact and not fear. Fear is a stressor I have chosen to eliminate from my life as I have many other stressors. Stress makes all my symptoms worse, and stress reduction is guaranteed not to cause drug interactions. Like exercise, it is highly recommended for use in PD.

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Yes, you are very wrong. I do not sell Ursodiol. Nor do I have any interest in promoting it.

 

I would suggest that you read my posts from the beginning of this thread. Then you will understand. Originally, only one of my Neurologists supported my decision to try this. Now, I have two Internists and two Neurologists supporting my decision. Obviously, there must be some merit someplace.

 

You're old enough to make and live by your own decisions as did I. In my mind, I'd ask the question: "What do you gain by not trying it and what do you lose (other than $40) if you try it and it doesn't help you?"

 

Regards,

Fred

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Hi Fred- Just curious- on this med does your tremor become more pronounced if you are in a stressful situation? Hope it continues to work for you. As for usings drug off label it happens more than a lot of folks think. I am on a heart med to slow down my too rapidly beating heart and unbeknownst to any of  my neurologists (and I have been through about a dozen) an unforeseen side effect was a positive and significant reduction in chronic headaches related to another barin issue I have- my cerebellum in herniated. No doctor would have prescribed it for that condition but after decades of almost daily headaches many that put me in the hospital on serious drugs to control it and 2 brain surgeries, I have drug that actually helps even though it is not meant for that. It has made a significant change in my daily life and I am happy to have accidentally found it.  Best of luck- Fred!

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Hi Annikin,

 

Both prior to as well as after I started taking Ursodiol, stress would increase my tremors. However, since I've been on Ursodiol, my stress related tremors are significantly less severe. And again, I would point out that based upon body weight, I am on a very low dosage level and have had zero side effects.

 

Fred

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interesting to run into this whole thread " cold " this morning.   thank you mr. fritz for posting something that you find beneficial to you, and that one of your drs. was willing to try after reading the article and possibly noting its uses for other un-related things, but he could at least see that there was not likely to be a serious problem with your trying it, if you so chose to do..  glad you found relief, and were excited enough to share.  we are our own advocates, and can study what is presented on these threads, and chose to act or not act on them.  i like to see what works for others.  stick it in the back of my head to re-address if i have symptoms that match others with their success.  i see nothing wrong with this.  i am personally just going on sinemet, and so will be seeing if that drug helps some of my issues.   not interested in anything else at the moment, but think it is great to have people write in and share their personal experiences.   what can that possibly hurt ?  you can talk to your dr. about information you read, or not.  your choice.   i'm happy that mr. fritz shared something he is excited about.  maybe someday, i will have something that changes something for me in a big way i can share.  not insist it is a panacea for everybody, but something that, hey, helped me.    everybody have a great weekend i hope.   too bad i hate football !  now, my SF giants in the world series, we would be talking about a fun game to watch tomorrow.....*sigh*....   see ? to each his own   :)

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As I stated before my mom's doctor has prescribed meds for her based on my inquiries but it was still up to him whether it's worth doing so for safety reason and for his reputation as an MD.  If I can be certain that a drug would work on her of course I would argue until he said yes but so far he's been pretty reasonable and have given me very good reasons for saying no at times.  

 

I think I will watch and see if Ursodiol is a winner. I don't want to ask about this just yet.  However, you go Fred!

 

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To All,

 

I don't know of anyone else who has or is taking Ursodiol. I started Ursodiol before my PD became (what I consider) severe. So, even if it works for others, it may not work for those with a more severe case than mine.

 

According to WebMD, the side effects of Ursodiol are stomach upset, nausea, diarrhea, dizziness, back pain, hair loss, or cough. That doesn't sound like something that should scare anybody. If you do get a side effect, simply stop the Ursodiol and it goes away. No harm, no foul! But what would you then say if you don't get any side effects and your tremors cease or become minimal?

 

To my way of thinking, it was a no brainer to give it a shot. I'm still waiting for another brave soul to test the waters with me and post their results.

 

Fred

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My only concern for you Fred is that it may take some time before negative effects appears and not necessarily the minor typical ones that you described.  Your liver or kidneys or heart even brain functions might be harmed.  You know there are some drugs that will cause more harm if you stop so you are basically hooked on it and the ill effects that go with it.  Just something to think about. i know you are feeling good right now and you feel like you've hit the jackpot but just pay close attention.  Stay well sir.

 

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Fred

Why don't you send your info to Dr Okun?

He may find it ineresting

How many mg do you take?

How often?

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Thanks to both of you for your concern. As for the long term possibility of side effects, I am aware of same but since this is a well documented 11 year old drug, I think any risks are minimal.

 

I buy my Ursodiol in 300mg capsule form. I take 600mg of Ursodiol per day. I take one capsule in the morning after breakfast and the second capsule in the evening after dinner. From what I've read, this is about half of the minimal recommended dosage based on body weight. I'm 230 pounds.

 

Dr. Okun is well aware of this study. See http://forum.parkinson.org/index.php?/topic/15081-udca-potential-for-parkinsons-treatment/. Ursodiol is ursodeoxycholic acid also know as UDCA. Feel free to ask him and refer him to this thread.

 

Fred

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Time for another update (for those who care):

 

Note: I see that Noah went ahead and asked Dr. Okun about Ursodiol and this thread. For anyone following the good doctor's posts, Noah got the expected answer.

 

In a few days, it will be my 5th month anniversary since I started Ursodiol and I have nothing new to report, That, in itself, is great news to me. My medications and dosages are still the same and my PD symptoms have not changed at all during these 5 months. Also, I have not experienced any side effects from the Ursodiol.

 

Again, I'd like to point out that prior to taking Ursodiol, my PD symptoms we continually worsening over time. Although I had a significant right hand tremor, I also had tremors on my left side and I had some difficulty walking and driving was becoming troublesome. All of that ceased when I started Ursodiol. For those new to this thread, I would suggest that you read it from the beginning.

 

I had been asked by a member of this group to stop the Ursodiol to see what happens. I've refused to do this. However, I will report that I have, on two occasions, missed my after lunch Sinemet (one of my two dosages - after breakfast and after lunch). As a result, I did experience some additional right hand tremor which abated shortly after I took my dose. So, the Ursodiol has not "cured" me. But it seems to have relieved me of most of my symptoms and, more importantly, it seems to have halted the progression of my disease. Of course, this is just my opinion.

 

Side Note: For those of you who scoff at Ursodiol, I read an interesting article in the March, 2014 issue of Discover Magazine entitled "The Nicotine Fix" by Dan Hurley. It seems that Nicotine (not smoking) has a positive effect in treating neurological disorders including PD. If I wasn't so satisfied with the results that I'm having with Ursodiol, I'd be giving the Nicotine patch a shot.

 

My next neuro exam is in mid June, I will update you again at that time. That will probably be my last post on this subject unless something new occurs.

 

Thanks for reading and good luck with your treatments.

Fred

Edited by MrFritz
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Fred,

 

Please don't take this wrong, but if you took a holiday from Ursodiol for a week and your symptoms got worse, that would add weight to your claims.

 

Dave

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Hi Dave,

 

No, I won't take your comment the wrong way. I do agree with your logic.

 

The reason that I refuse to go off of the Ursodiol is as follows: If my symptoms do worsen (as I suspect they will), will they then revert back to the way I am today when I restart it or will my PD simply cease advancing, as I suspect it is doing now, leaving me with tremors again. Nobody knows the answer and therefore, I'm not willing to take the risk. The one true fact is that I am and have been basically tremor free since I started this regimen and I want to remain that way as long as possible.

 

Now, if another person (preferably a few) is willing to try it for 1 week then we will also know if this does or does not have merit. Because this is working for me, it doesn't mean that it will work for you or anyone else.

 

Regards,

Fred

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Fred,

 

I have read the entire thread, and I commend you for continuing to inform others of a rx that has given you such dramatic relief. I recognize your results may be singular to you, yet, what I hear you say, is your desire to see if others would benefit also...and in doing so, anecdotal successes may evolve into "evidence based" solutions. Our greatest miracles of science all were born by serendipity at some point in time. Therefore, I understand your passionate diligence in wanting to make others aware of the success you have experienced.

 

I wd personally message you ...but, one I don't know how, and two, since there is such an "engaged" discussion, I wd b very interested on others' opinions.

 

I want to know if u have any opinion on MY non "evidenced based" discovery to reduce my tremors and gait problems..and tell me if you think there is any correlation to your experience with Ursodiol.

 

I will try to be succinct. What started me in the channel of dx of a neuro disease was a referral to a GI specialist in a well known esteemed medical facility. I have an active bowel, and watery yellow diarrhea daily regardless of diet. The GI dr did a full series of exams, but noted I had a tremor in my right hand. After asking me several questions, and reporting all exams negative, he referred me to the MS specialist. I was dx'd probable MS.

 

But I developed significant tremors on my right side, and many other PD symptoms. I am 66 yrs old, dx'd 6 mos ago w/PD by a MDS, and prescribed generic carbidopa L dopa 50/200 4x per day.

 

After hearing many anecdotal stories of coconut oil helping neuro chronic diseases, I researched the topic on line. I tried 2 tablespoons. At the risk of bringing on comments from skeptics, I cannot tell a lie. I felt improvement within minutes. I had the same experience with l dopa when ingested the first time. "Evidence based " medicine does not support immediate relief from neuro rx, but, in my case, observed by neuros, I did indeed have immediate relief from L Dopa, and the same with coconut oil. For doubters, I will add, other meds provide immediate relief as well, and, a cousin to L-dopa, heroin, has immediate impact on the brain.

 

I, myself, cd not believe the effect coconut oil had on me, and thought it was pry psychosomatic. I abstained from the oil, symptoms returned. When I take the oil, they improve. (I am able to reduce my prescribed rx by 1/2 when I take the oil). However, what convinced me the oil had impact was the fact that when I take the oil, if I need to go to the bathroom from a sound sleep, I walk with little stiffness or rigidity. If I do not take the oil, I walk straight legged, stiff, and shuffle. I figure that rules out psychosomatic.

 

So here is getting to my question, Fred.. As I understand the mechanism of coconut oil on the brain, is it is a different fatty compound than any other fat. It has the capacity to transcend the brain barrier when other fats do not. Cell death occurs when cells are denied fats. Theories are proposed that the coconut oil can actually renew cell growth in some people. PD occurs in people from diverse origins, and perhaps only a certain segment of PWP are impacted by this.

 

Flash back to my original problem that sent me to neuros...and no one talks abt now cuz we are all consumed by PD...is the fact that my liver enzymes are always elevated..but not high enough for invasive testing...I have watery, debilitating bright yellow diarrhea daily...for years...after reading your thread about Ursodiol being an rx for liver disease, yet off label controlling your tremors...my tremors responding to ldopa...but I hv negative DaT and MRI scans, and atypical labs for PD.....is it just me, or do you see a possible correlation between your combination of rx that remedied your tremors, and my experience with coconut oil augmenting my meds for tremor and rigidity????? Is there a common denominator in this mix? Liver? Fat absorption? Genetic propensity for blood brain barrier to oils?

 

Fred, you and I are thinking outside the box to coin a popular saying to denote creative thinking in pursing concrete solutions. So, please, everyone, I KNOW this is not established medical protocol....I am not suggesting in any form for anyone else to even try coconut oil, and I certainly am not selling the product. I find it fascinating, however, that Fred and I have both had an experience that affected our symptoms..changed the presence of PD...albeit some may argue, temporarily...and put another face on possible causes for the PD symptoms.

 

Fred, I am eager to hear your response....and...if you think I am on another planet right now, it is ok...cuz, like you, I cannot deny reality regardless if it fits established criteria or not. I know the improvement I have is real....just want to understand it, and consider asking my neuro abt Ursodiol.

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